%0 Journal Article %J Journal of Palliative Medicine %D 2022 %T Impact of Comorbid Dementia on Patterns of Hospice Use. %A Aldridge, Melissa D %A Hunt, Lauren %A Husain, Mohammed %A Li, Lihua %A Amy Kelley %K Comorbidity %K Dementia %K end of life %K Health Services Research %K Hospice %X

The evidence base for understanding hospice use among persons with dementia is almost exclusively based on individuals with a primary terminal diagnosis of dementia. Little is known about whether comorbid dementia influences hospice use patterns. To estimate the prevalence of comorbid dementia among hospice enrollees and its association with hospice use patterns. Pooled cross-sectional analysis of the nationally representative Health and Retirement Study (HRS) linked to Medicare claims. Fee-for-service Medicare beneficiaries in the United States who enrolled with hospice and died between 2004 and 2016. Dementia was assessed using a validated survey-based algorithm. Hospice use patterns were enrollment less than or equal to three days, enrollment greater than six months, hospice disenrollment, and hospice disenrollment after six months. Of 3123 decedents, 465 (14.9%) had a primary hospice diagnosis of dementia and 943 (30.2%) had comorbid dementia and died of another illness. In fully adjusted models, comorbid dementia was associated with increased odds of hospice enrollment greater than six months (adjusted odds ratio [AOR] = 1.52, 95% confidence interval [CI]: 1.11-2.09) and hospice disenrollment following six months of hospice (AOR = 2.55, 95% CI: 1.43-4.553). Having a primary diagnosis of dementia was associated with increased odds of hospice enrollment greater than six months (AOR = 2.62, 95% CI: 1.86-3.68), hospice disenrollment (AOR = 1.82, 95% CI: 1.32-2.51), and hospice disenrollment following six months of hospice (AOR = 4.31, 95% CI: 2.37-7.82). Approximately 45% of the hospice population has primary or comorbid dementia and are at increased risk for long hospice enrollment periods and hospice disenrollment. Consideration of the high prevalence of comorbid dementia should be inherent in hospice staff training, quality metrics, and Medicare Hospice Benefit policies.

%B Journal of Palliative Medicine %V 25 %P 396-404 %G eng %N 3 %R 10.1089/jpm.2021.0055 %0 Journal Article %J JAMA Internal Medicine %D 2021 %T Family Caregiving for Those With and Without Dementia in the Last 10 Years of Life. %A Reckrey, Jennifer M %A Bollens-Lund, Evan %A Husain, Mohammed %A Katherine A Ornstein %A Amy Kelley %K Caregiving %K Dementia %X Family caregivers of people with dementia (eg, spouses, children, and other unpaid caregivers) provide high levels of care1 and experience substantial caregiver strain at the end of life,2 yet little is known about the trajectory of care as the end of life approaches and how individual family members contribute to total care. We compared the hours of care that family caregivers provide to those with and without dementia during the last 10 years of life. Methods We sampled all decedents in the nationally representative Health and Retirement Study, including interview waves 2006 to 2016, who were 75 years or older at the time of death (n = 5266) and excluded those with significant missing data (n = 1317). Data analysis was conducted between October 2019 and March 2020. We determined each family caregiver’s annual care hours using the decedent’s self-reported hours of help received with self-care and household activities in the preceding month. We estimated caregiving hours between interviews using a weighted average of hours from each interview and assigned annual prorated hours based on the time from interview to death.3 We used a clinically validated algorithm4 to determine dementia status in the interview before death and then stratified results based on marital status. The study was approved by the Mount Sinai School of Medicine institutional review board with a waiver of informed consent due to the retrospective nature of the study. Results Family caregivers of people with dementia provided 3 times as many total hours of care over the last 10 years of life compared with caregivers of those without dementia (Figure). While care hours provided to those with dementia increased steadily in each of the last 10 years (mean annual increase, 17%; range 18%-41%), care hours provided to those without dementia remained low and then nearly tripled in the last year of life (mean [SD] of 8 [23] hours of care per week 1-2 years before death and 22 [35] hours in the last year of life). Adult children of those with dementia provided a larger portion of total care hours (50%) compared with those without dementia (41%). In the last year of life, adult children of those with dementia provided a mean (SD) of 17 (34) hours of care per week, while children of those without dementia provided a mean (SD) of 10 (22) hours. Among those married at the interview before death, spousal caregivers provided most of the care hours over all 10 years before death in the dementia and nondementia groups (81% and 77% of total care hours, respectively). Discussion Our study highlights the high levels of caregiving provided to those with dementia by their family caregivers in general and by adult children in particular. All married individuals relied primarily on spouses to provide care. However, adult children provided the bulk of care for family members with dementia, who were on average older and more likely to be widowed; substantial caregiving responsibilities for this population often began at least 10 years before death. The survey data did not assess the total time caregivers spent with family members; some time reported as caregiving may have replaced time spent in social engagement before needs arose, and our results may therefore overstate the time spent providing care. However, this limitation is unlikely to explain the many hours spent caregiving for individuals with dementia. Moreover, sustained caregiving responsibilities for individuals with dementia likely have financial implications beyond the time spent providing care. Caregivers may work fewer hours, miss opportunities for advancement, or fail to enter or stay in the workforce5; indirect costs of caregiving affect financial security and retirement savings and may even affect opportunities for the next generation. Because of the higher prevalence of dementia among those with lower socioeconomic status, the intergenerational effect of caregiving is particularly concerning for those already struggling to achieve equity. Existing programs that provide short-term, episodic support for caregivers (eg, the US Family Medical Leave Act and paid family leave) do not match the long-term, progressive care needs of those with dementia. %B JAMA Internal Medicine %V 181 %P 278-279 %G eng %N 2 %R 10.1001/jamainternmed.2020.4012 %0 Journal Article %J Journal of the American Geriatric Society %D 2021 %T A national profile of kinlessness at the end of life among older adults: Findings from the Health and Retirement Study. %A Natalie Plick %A Claire K. Ankuda %A Christine A Mair %A Husain, Mohammed %A Katherine A Ornstein %K Caregiving %K end of life %K Families %K kinlessness %K location of death %X

BACKGROUND/OBJECTIVES: The majority of end-of-life (EOL) caregiving is provided by unpaid family members. An increasing number of older adults are kinless (without close family/partnerships) and may have insufficient caregiver support to remain at home at the EOL. We therefore determined what proportion of older adults are kinless at the EOL and assessed the association of kinlessness with EOL care.

DESIGN: Retrospective analysis of Health and Retirement Study decedents, 2002-2015.

SETTING: US population-based sample.

PARTICIPANTS: Decedents age 51+ who died within 1 year of interview (n = 3844) and subset who are community-dwelling at last interview.

MEASUREMENTS: Kinlessness was defined as lacking a spouse/partner and children. Primary outcome measure was location of death. Secondary outcome measures included contextual EOL measures such as symptom burden and caregiver support.

RESULTS: A total of 7.4% of decedents were kinless at the EOL. Kinless decedents were more likely to be female, nonwhite, enrolled in Medicaid, living alone, or living in a nursing home prior to death. Although community-dwelling kinless decedents received fewer hours of caregiving per week at the EOL (34.7 vs. 56.2, p < 0.05) and were more likely to die in nursing homes (18.1% vs. 10.3%, p < 0.05) than those with kin, they did not have higher EOL symptom burden or treatment intensity (e.g., intensive care unit use). In multinomial logistic analysis controlling for demographic and illness characteristics, kinless decedents living in the community before death had a twofold increased risk of dying in the nursing home (odds ratio [OR] = 2.02 [95% confidence interval (CI) = 1.09-3.72]) and a trend toward increased risk of hospital death (OR = 1.60 [95% CI = 0.96-2.69]) versus home setting.

CONCLUSIONS: Kinless individuals are more likely to die in nursing homes, even if they are living in the community in their last year of life. Expanded long-term care services and policies are needed to enable all older adults regardless of their family support systems to receive high-quality EOL care.

%B Journal of the American Geriatric Society %V 69 %P 2143-2151 %G eng %N 8 %R 10.1111/jgs.17171 %0 Journal Article %J Journal of the American Geriatrics Society %D 2020 %T Residential Setting and the Cumulative Financial Burden of Dementia in the 7 Years Before Death %A Amy Kelley %A Kathleen McGarry %A Bollens-Lund, Evan %A Rahman, Omari-Khalid %A Husain, Mohammed %A Ferreira, Katelyn B. %A Jonathan S Skinner %K community-dwelling older adults %K Dementia %K health-related costs %K Medicare and Medicaid %K nursing home %X OBJECTIVES Care for older adults with dementia during the final years of life is costly, and families shoulder much of this burden. We aimed to assess the financial burden of care for those with and without dementia, and to explore differences across residential settings. DESIGN Using the Health and Retirement Study (HRS) and linked claims, we examined total healthcare spending and proportion by payer—Medicare, Medicaid, out-of-pocket, and calculated costs of informal caregiving—over the last 7 years of life, comparing those with and without dementia and stratifying by residential setting. SETTING The HRS is a nationally representative longitudinal study of older adults in the United States. PARTICIPANTS We sampled HRS decedents from 2004 to 2015. To ensure complete data, we limited the sample to those 72 years or older at death who had continuous fee-for-service Medicare Parts A and B coverage during the 7-year period (n = 2909). MEASUREMENTS We compared decedents with dementia at last HRS assessment with those without dementia across annual and cumulative 7-year spending measures, and personal characteristics. We present annual and cumulative spending by payer, and the changing proportion of spending by payer over time, comparing those with and without dementia and stratifying results by residential setting. RESULTS We found that, consistent with prior studies, people with dementia experience significantly higher costs, with a disproportionate share falling on patients and families. This pattern is most striking among community residents with dementia, whose families shoulder 64% of total expenditures (including \$176,180 informal caregiving costs and \$55,550 out-of-pocket costs), compared with 43% for people with dementia residing in nursing homes (\$60,320 informal caregiving costs and \$105,590 out-of-pocket costs). CONCLUSION These findings demonstrate disparities in financial burden shouldered by families of those with dementia, particularly among those residing in the community. They highlight the importance of considering the residential setting in research, programs, and policies. %B Journal of the American Geriatrics Society %G eng %U https://onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16414 %9 Journal %R 10.1111/jgs.16414